The Alzheimer's Digest: "I'm Done": How Lack of Privacy Can Sabotage Family Caregivers

Sunday, July 21, 2013

"I'm Done": How Lack of Privacy Can Sabotage Family Caregivers

Caring for an aging parent or other loved one in your home usually begins with the best of intentions. Over time, however, a good thing can disintegrate into a tough, tense situation. Knowing the top trouble spots can help you make changes that can delay or avoid the need to move on to out-of-home placement.

Here is a big "sore point" that undermines family caregiving -- and what to do about it:

Lack of privacy

Everyone in a caregiving family needs privacy -- the freedom to exist in their own space.
Having physical privacy means having boundaries that let everyone in the house get away from 24/7 interactions. It's especially challenging in small living spaces or when the live-in elder has dementia. The disinhibition (loss of social appropriateness) that can be part of a dementia like Alzheimer's can lead a loved one to barge into bedrooms and bathrooms, for example.

Having mental privacy means being able to continue some version of long-established family time and traditions. While it's important to weave a live-in guest into family life, this needs to be balanced against the risk of alienating kids and spouses who may miss old routines or come to feel ignored.
"The time and energy of caregiving, by necessity, must be taken away from other things, especially family," says geriatric psychiatrist Ken Robbins of the University of Wisconsin-Madison, who counsels family caregivers. "This may be the biggest issue for caregivers."

Lack of privacy: Solutions

Make necessary home improvements to allow the live-in elder to have his or her own space, not just for sleeping but also for living: a TV set and comfortable chair, a desk, opportunities to get out of the house. Avoid making a child share a room with an elder if you can. Explore whether a parent's assets can be used to fund a modest addition to a caregiving adult child's home, rationalized as a cheaper alternative than out-of-home care.
Establish household rules everyone agrees on for the use of the TV, the kitchen, and other possible points of conflict. Keep in mind, though, that in the case of dementia, rules become less realistic as the disease progresses.
Remain conscious of maintaining one-on-one time with other family members. Your live-in elder doesn't always have to come first with you; use respite care or other relatives to supplement care.
Don't put vacations, school or sports events, or other previous family activities on indefinite hold.
Use locks and a low-key response to help manage disinhibition; explain it to kids so they're not frightened.
If boundary-intruding becomes overwhelming, talk to the doctor about making sure medications (like antianxiety drugs) or alcohol use aren't contributing to the problem. If aggression is the problem and it can't be managed with behavior modification or medication, realize this can be a deal-breaker for home care. Everyone in the house -- including you -- must be safe.